Copyright

All posts for the day December 11th, 2012

Ronan. I’ve spent the past two days, doing exactly what it is that I love doing. Being so insanely busy with all things you and this pediatric cancer world. My favorite days consist of being surrounded by the most brilliant minds who eat, sleep and breathe Neuroblastoma in the most beautiful way possible. Dr. Sholler was in town so I soaked up as much time as I could with her. We had a wonderful dinner with some wonderful people who are so passionate about our mission and what it is we are trying to achieve. People who want to help us get things done and who know that things need to change in a very big way because the old barbaric ways of dealing with pediatric cancer, are just not right. I spent the past 2 days talking about our ideas and picking the brains of some of the most intelligent people out there, working in this world. I spent the past couple of days, feeling like I could breathe again. It’s the only world I do really, really well in. It’s really the only world I want to be in. I don’t belong in the normal world anymore. I’ve known that for a very long time.

So, the past 2 days I have been slammed busy with meetings, dinners, breakfasts, and all things childhood cancer. Our little plan, is slowly getting some legs. I want to do this the right way, therefore everything has to be thought out meticulously. That is so hard to do, when all I want to do is run, run, run because kids are dying and not being treated the right way and it is so very hard to sit back and watch. I feel so helpless but I just have to remember, things like this take time and things like this, do not happen overnight. But it does not stop my heart from breaking, over and over again. I know my heart will continue to break over and over again, for the rest of my life. It’s o.k. though. It could never be fixed again after losing you. I am o.k. with living with a broken heart. You are so very much worth this pain. It just reminds me of how much I love you.

I cannot shout from the rooftops loud enough of how much I love Dr. Sholler. How much I believe in her and what she is doing. I’ve said it before and I’ll say it again. She will be the one to change Neuroblastoma and I will do whatever I can, to help support her. I’ve never in my life met a more brilliant woman who is not only a bloody genius, but so compassionate as well. Every single child matters to her. They are not just numbers or statistics. She has no ego at all. The no ego things is so very rare in this world where many doctors seem to often develop a God complex. She is a breath of fresh air and I will forever be so sad, that we didn’t get you to her in time. I don’t know if this would have changed your outcome or not, but it’s the not knowing that I will always regret. Add it to my list, baby doll.

On top of being very, very busy… I’ve been dealing with just general everyday noise of the outside world that I don’t have much of a tolerance for anymore. This is the general reason that I no longer troll Facebook like I used to, before you were sick. I can’t take seeing the ridiculous amount of stupid updates, drama, or people complaining. Every time something like this pops up, I just want to punch my computer screen. Save the drama, for your mama. If you only knew how lucky you were, to have your stupid drama, you wouldn’t make it drama, dumbasses. I came home tonight, trying to ignore the static of the world. I came home and saw that I had about 50 Facebook notifications. As soon as I logged on, I saw this from Teddy’s page. The only page I’m really interested in right now.

“Dear friends of Jim, Clarence and Leo,

We invite you to gather in Jim and Clarence’s backyard for a candlelight vigil tomorrow evening, Dec 12 from 6pm to show them our love and support.

Jim and Clarence are unable to accept visitors at this time and ask for your understanding. They will enjoy the warmth and love of their friends coming together in this way and Teddy will see our light though their bedroom window.

This will be a peaceful gathering with a reflective mood.

When: 6pm, Wednesday, December 12
Where: Backyard
Please bring a candle and dress warmly as it can get very cold at night.

I felt sick when I read this, but also felt a wave of warmth wash over me in a way that I’m not used to anymore. What a thoughtful and simple thing to do. The thought of Teddy, seeing all the lights shine through, made me happy and sad all at the same time. I wish I could be there, but since I cannot, I will be lighting a candle here instead. I would love to ask you all to do the same. Just take tomorrow night to think about Teddy and put away all the petty bullshit that we seem to get so caught up in. Because at the end of the day, if you are healthy and your family is healthy, then all other problems can be fixed, right??? Seems pretty fucking logical to me. Teddy’s problem cannot be fixed. Ronan, you are dead. You, my son, are fucking DEAD. I don’t get a chance to sit back and reflect on my “problems,” that can be fixed. I cannot fix the death of you. So what do I get to do, Ronan? I get to block out the noise and focus on helping others and trying to fix this world for the rest of my life. I myself tend to get caught up in the drama and tonight, I got a very big reminder that I just cannot do it. I won’t do it. I’ve got bigger fish to fry, little one. I know the things that matter most in life and sometimes for me, it is just surviving the day. Sometimes, it is just trying to stay alive, form a coherent thought or put one foot in front of the other. Other days, like today, it is called kicking cancer’s ass. I like those days, the best.

Alright, little one. I’ve got a raging headache. Sleep has not been my friend the past 2 nights. I am hoping to make it my friend, tonight. I need a break from the tossing and turning and freaking out about you not being in your little bed. It is always perfectly made in the most taunting way. Thanks a lot, asshole cancer. You should be here, messing it up and tucked away safe and sound in it. I’m so sorry you are not.

I miss you. I love you. I hope you are safe. Keep an eye on our Teddy boy. He needs it. G’nite Ro baby. Sweet dreams.